New person from Maryland

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jerilyn
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New person from Maryland

Postby jerilyn » Mon Mar 06, 2017 6:24 am

Hi, I'm new to the whole posting on bulletin or discussion boards, so I hope I'm doing this right. Anyway I've have had RLS for years (since my 30s) and was officially diagnosed with RLS and put on medication around 2006 or 2007. Now the medicine I've been on Requip has augmented and the Mirapex my neurologist switched me to has also augmented. So now I'm on a tapering off of RLS medicine and I've still have to go through 10 days of no medication after the tapering is over. I'm down to two pills a night, soon to go to one pill a night and then every other night and then none. So that's why I'm up at 1:21 am. I hate this terrible disease, it has changed my whole life. Will this tapering off of the medication make things better and can those who have done it let me know how they made it. I'm having a hard time right now. :( Guess I just want to know if there is any light at the end of this dark tunnel?

Polar Bear
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Re: New person from Maryland

Postby Polar Bear » Mon Mar 06, 2017 12:17 pm

Hi jerilyn, and welcome.
You are on the right road getting off DAs aftr having augmented. You don't mention what dosage you are tapering down from.
There are varying opinions on how to come off a DA. Some experts consider the taper as you are doing, also a very slow taper, others consider cold turkey to be the way to go.
I'm wondering did your neurologist discuss prescribing a different type of medication to ease the journey off the Mirapex (DA). It looks like his plan is for you to be totally free of any medication before continuing treatment.

Do you and your neurologist have a treatment plan for when the ten days without medication is up?
Also, do you know your ferritin serum level. If not you should have this done, it should be up around 100. Non sufferers can accept 20 as normal - but often doctors don't know that an RLS sufferer needs it to be much higher. The ferritin should be up around 100 before starting any DA medication as this lessens the likelihood of augmentation.

I haven't done the taper myself, but there are those who have. It is not easy, it is very difficult, but according to those who have done it there is indeed a light at the end of the tunnel - and the light is well worth it.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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SLEEPY ANGEL
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Re: New person from Maryland

Postby SLEEPY ANGEL » Mon Mar 06, 2017 1:12 pm

jerilyn---
Welcome! This is the best place to be getting a look at other sufferers' experiences. I have no idea what my iron level has been, but my medication experience has been as follows : I only began in Aug. of 2016 to use Ropinirole, and after 4-5 months I figured out that what was happening was called augmentation, symptoms coming on around 6 or 7 PM instead of when I went to bed. I experimented by cutting the pills and taking .25 at 6 PM. (Didn't think about when the pill would actually kick IN)! But anyhow, my Neurologist said to "get ahead of it" and was OK with what I was doing. She put me on Gabapentin which was to help me feel sleepy and get a better night's sleep. It was all fine for a couple months, but the Gabapentin actually needed to be at a higher dose.... and that's where I am now, with Ropinirole cut into pieces to take from 6 PM onward (total of that is 1 mg); the Gabapentin is taken at 5:30 PM (100 mg) and 7:30 PM (100 mg) and another 200 mg at 9 PM. This has been wonderful for me, and I've not had to taper off anything because of augmentation. My Neurologist thinks I could switch to Mirapex if my regimine doesn't go well eventually. Well, what I do isn't necessarily what someone else could find helpful, but Gabapentin has actually been great for me.

legsbestill
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Re: New person from Maryland

Postby legsbestill » Mon Mar 06, 2017 8:31 pm

Hi Jerilyn,

Going through withdrawal from a dopamine agonist, as you currently are, is exceptionally hard. I really feel for you. And you are quite correct that it could well get even worse when you stop taking the medication entirely. However there is certainly light at the end of the dark tunnel. It may be helpful to hear the experience of others, if only to know what to expect - I wish I had bothered to inform myself better before I went through it last May.

My sleep consultant prescribed Pregabalin (Lyrica) to help me through the process but my experience - which is backed up by almost everything I have read since - was that Pregabalin was nowhere near powerful enough to overcome the appalling symptoms of early dopamine agonist withdrawal (it can be an effective treatment once the d/a has washed out though). I had many nights with absolutely no sleep. At best I would get maybe 40 minutes to an hour here and there. Like you I was fortunate to have a supportive spouse which is worth a lot. Unfortunately, for me the process went on for many weeks.

I stopped taking pregabalin after a few weeks as it made no difference and thereafter I went through the withdrawal process without any effective medication. Eventually, after about 3 months my php prescribed Oxycontin and it will be a long time before I forget the relief of my symptoms finally quietening down with 30mg Oxycontin so that I could get some sleep. I eventually cut out Oxycontin for a while as I was anxious about dependency - stopping Oxycontin was a walk in the park by comparison with stopping the dopamine agonist.

I was exceptionally fortunate in that my symptoms improved significantly when I made a concerted effort with the oral iron and my serum ferritin levels increased from about 29 to 79. I am really glad I am no longer augmented on a dopamine agonist. My symptoms are much better than they were before I stopped the dopamine agonist. After the d/a is washed out of your symptoms there is a process of experimentation to get the right drug regime to treat your rls - everyone being slightly different in their response.

Things I wish I had known: That many rls experts prescribe opiates to help get through the withdrawal (I would say this is the humane method); That getting my iron levels up would ultimately make such a difference to my symptoms.

If I was going through it again, particularly if I was holding down a job at the same time, I would insist on having Oxycontin or something comparable but I know that some experts like to get all drugs out of the system and it looks like yours wants to achieve that. I wish you all the best. You will be absolutely delighted when you get the drug out of your system. You will also know the depths of your resilience and inner strength.

Rachel

SLEEPY ANGEL
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Re: New person from Maryland

Postby SLEEPY ANGEL » Mon Mar 06, 2017 10:10 pm

legsbestill----
I have a question about oral Iron ... I am only taking a 45 mg tablet once/day and don't know what level that has produced in my system, but I do get constipated with that amount. If you made a concerted effort to get your iron up from about 29 to 79, how did you avoid constipation? Are you constantly taking Metamucil (or some such product)? I've never been able to get enough FIBER in my diet to help in such a matter...

ViewsAskew
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Re: New person from Maryland

Postby ViewsAskew » Tue Mar 07, 2017 3:51 am

Yep - there is light. As with many others here, I've seen it myself :-).

BUT - it will not be better quickly AND it may seem much worse before it gets better. Until you stop it all, you may not realize just how awful it can get. I mean awful. It passes. It is hell during, but eventually, it is better. It took more than ten days for me - but your neuro may just want that washing out period and then will likely introduce a new med. The protocol you are describing sounds very similar to the one the docs at Johns Hopkins use.

Do you know what the doc will have you try next?
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

legsbestill
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Re: New person from Maryland

Postby legsbestill » Tue Mar 07, 2017 11:55 am

SLEEPYANGEL, I am blessed with a particularly high-functioning digestive tract that seems to take constipating medications relatively in its stride. I don't think I am typical. I do have some constipation but nothing that ... as it were ... completely stops me in my tracks. I find liquorice tablets can be effective but generally I have not had to resort to anything more severe than a couple of glasses of warm water and some gentle exercise.

I'm hopeless at verifying things I read on the internet so this may be so much hot air but I have heard that the body absorbs iron better if it is not taken every day - maybe every second day. I try therefore to take breaks and also to resume again but I find it difficult to remember sometimes and consequently I am sometimes a bit haphazard in my dosage. Maybe this also helps with the constipation.

Yankiwi
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Re: New person from Maryland

Postby Yankiwi » Tue Mar 07, 2017 10:34 pm

Drinking plenty of water helps avoid constipation. Every morning I fill a one liter bottle of water, drink a 200ml (about 6 oz) glass of water before breakfast and several glasses during the day until it is gone. This is in addition to water taken with medicine and other liquids--tea, coffee, juice etc.
I find it easier to have a visual reminder of how much to drink rather than just trying to remember to drink. Luckily I am retired but water bottles would also work.

SLEEPY ANGEL
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Re: New person from Maryland

Postby SLEEPY ANGEL » Wed Mar 08, 2017 11:08 pm

Yankiwi
and
legsbestill...
Thank you both for comments Re constipation from taking Iron tablets. I think I drink plenty of water; I also think I have a slow system : even prunes don't do a thing for me whereas many folks swear by that! I'm counting on the Metamucil and that's sort-of what's working.

badnights
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Re: New person from Maryland - iron

Postby badnights » Thu Mar 09, 2017 8:51 am

jerilyn wrote:I have a question about oral Iron ... I am only taking a 45 mg tablet once/day and don't know what level that has produced in my system, but I do get constipated with that amount. If you made a concerted effort to get your iron up from about 29 to 79, how did you avoid constipation? Are you constantly taking Metamucil (or some such product)? I've never been able to get enough FIBER in my diet to help in such a matter...


I got constipated the first time I used an opioid (after knee surgery).

I went on to get crazy WED after the surgery and a few years later ended up on opioids. I ate oatmeal every morning with 1/4 c (I think) of wheat bran thrown in. That kept the constipation at bay, but every now and then I made use of a prescription for lactulose (a sugar that gets things moving again) (one prescription lasted years), also of home remedies (eg. eat a raw beet, you'll go within 24 hours - but I usually didn't want to wait that long!).

But things really changed for the better after I started following the Wahls diet for MS (hoping it would work on WED, on the advice of my doctor). It calls for 9 cups of vegetables per DAY. It was quite something to eat that much veggies - mostly I blended them into smoothies plus I had a large salad or bowl of sauteed veggies. But I've never had a problem with constipation after that.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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badnights
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Re: New person from Maryland

Postby badnights » Thu Mar 09, 2017 8:52 am

Yes there's a light at the end of the tunnnel! In fact it's much brighter than the light on the side you're coming from. Everyone has given you good advice. I'm responding to your post in the Severe RLS thread too . .
There's a link in my signautre that leads to a page of links to information on augmentation; some of it might be useful for you.

Do you really have DAWS? It's something different from withdrawal from dopamine agonists, even though its name is Dopamine Agonist Withdrawal Syndrome. (It typically happens after sudden cessation of high doses of dopamine agonists, and most often in people who had developed an impulse control disorder (a possible side effect of DA use). It involves an array of possible symptoms including anxiety, pain, apathy, fatigue, an inability to experience pleasure, and abnormal sensations.) I think on this board we've had one case of DAWS developed in someone with RLS/WED. Mostly it seems to develop in Parkinson's patients, who take much higher doses than us.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

SLEEPY ANGEL
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Re: New person from Maryland

Postby SLEEPY ANGEL » Fri Mar 10, 2017 3:34 pm

badnights---

Hmm... I think I'll google the Wahls diet for MS and see if I could possibly tolerate it; even tho. I like Veggies, I'm not sure I'd love 9 cups per day! I eat about 3-4 C per day now, so would have to AT LEAST double that. Thanks for that suggestion.

Rustsmith
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Re: New person from Maryland

Postby Rustsmith » Fri Mar 10, 2017 4:08 pm

SLEEPY ANGEL, you might also want to take a look at some of the other low carb diets, especially some of the ones that are being used as alternatives to medication for epilepsy patients that do not respond well to modern meds. There are a number of these diets that are based on lots of veggies and the use of good fats as a source of required calories rather than carbs. If you don't find WAHLS quite to your liking, maybe one of the others would fit the bill.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

SLEEPY ANGEL
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Re: New person from Maryland

Postby SLEEPY ANGEL » Sat Mar 11, 2017 3:00 pm

Rustsmith--- Thank you for the suggestion of looking into the diets for epilepsy patients.
Sounds like a possibility for me.

badnights
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Re: New person from Maryland

Postby badnights » Sun Mar 12, 2017 6:10 am

True, that's how Wahls developed her diet - starting from the knowledge that high-fat low-carb diets worked for kids with epilepsy, she figured it might help MS. It seems to have helped her a lot, but who knows if she would have gone into remission anyway. It certainly helped me - I was able to drop from 18-21 mg hydromorph contin to 9 (and sometimes these days, 12). I have broken with the low-carb part of it (it was extremely low carb) because I love working out and it left me exhausted and unable to recover.

What she did differently is calculated how much of various things she would need to eat in order to consume the US FDA's recommended daily intake of every known micronutrient, from vitamin A to zinc. She condensed that information into the amount of vegetables of 3 different types that one should eat to get all those nutrients. I'm over simplifying, since she also considered the various micronutrients that come from meat, fruit, and other food. The goal is for the body to enter ketosis, a state in which it burns fatty acids (from fat) as its primary fuel, instead of glucose (from carbs and proteins). It can't enter ketosis if there are more than a certain amount of carbs in the diet. Fruits and veggies are largely carbs (and water!), but she was able to enter ketosis despite eating lots of vegetables by eliminating all grains and starchy vegetables, and most fruits - i.e. sticking to nutrient-dense foods.

I'm not aware of other paleo diets that pay this much attention to micronutrient intake. I'm not convinced the FDA has the end story on how much of everything we need, though! At least the diet insists on whole foods, as little altered as possible, in explicit acknowledgement of the fact that we probably haven't yet identified every micronutrient we need ,nor with which other substances they need to be consumed to be effective.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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